Renaissance Festival

We were lucky enough to get free tickets to the Renn Fest today, and I'm super glad we went, as it was great weather, and Em had a wonderful time.  Sadie slept most of the time, but when she woke up, instead of keeping her in the stroller, I put her in the Baby Bjorn so she could "see" what was going on.  I had her big brimmed pink hat on her, covering up her eyes from the powerful rays of the sun.  It's so tough to be outside with her glaucoma; it makes me sad that life is so bright for her.  

As we were walking up to a vendor to get some ice cream for Em, the gentleman working behind the counter mentioned that Sadie couldn't see from underneath her hat.  Maybe it was his tone (don't-you-know-your-baby-can't-see-anything) or look of questioning, but something inside me snapped.  "She has glaucoma!", I almost shouted.  I'm sure he meant nothing by it, but some days I am able to be patient with the comments and some days the comments trigger my "Momma Lioness" (as Sadie's wonderful ECFE teacher calls it).  

Sorry, vendor at the Fest.  I'm still learning how to deal with this life that God has given me.  

Picture of Sades in her hat (from a previous outing).  BIG brim to cover her eyes!

Organization for this cluttered mind!

I had a conversation with my dad yesterday; I explained to him that my life has changed in ways I never knew it could.  Obviously, having my second blessing in my life was bound to change our family and our lives in wonderful, amazing ways.  But, with Sadie's diagnosis, things have REALLY changed.  I now live in a world of surgery and doctor's appointments, plus looking at Pintrest ideas for visually impaired children as well as blogs and websites for children with glaucoma.  In order to make sense of the chaos, Joel found and bought a fantastic product, "My Doctor Book".  I finally got the finishing touches done last night, and I love it!!!  I will bring it to every future appointment for Sadie, including our visits to Gillette Children's for physical therapy.  

Inside it has space for business cards, insurance information, medicine info (doses, date taken, etc.), and procedural information.  I have added tabs for each surgery that Sadie has been through, so I can look back and refer to doctor's notes at any time.  I love this!

Post-op!

    Although I certainly don't enjoy going to post-op appointments on my own, I understand that Joel has taken his share of time off recently, so I journeyed to campus yet again to check in with Dr. G.  Sadie was SUPER fussy last night and this morning, and although it's to be expected post surgery, it makes the whole family a little irritable.  It's certainly not easy to hear her suffer during the 40 minute car ride; Tylenol just doesn't cut it after a Goniotomy.  
    As we arrived at the clinic, Sadie was (yet again) the youngest patient by at least 70 years.  The only good thing about that is we get a lot of sympathy from the elderly patients, similar to how a great grandparent would be.  This time around I talked to a very nice older couple who asked about Sadie's shield and patch; they were quite surprised to hear about bilateral cataracts in a baby.  
    After a blow-out diaper, using all the wipes I had, and coming unprepared with no extra outfit (Murphy's Law!), we were called back.  Sadie was unable to be soothed by bottle, pacifier, rocking, etc. so by the time the intern came in to take off her patch, I just asked that he do it QUICKLY.  She always cries so hard when the tape comes off, and it breaks my heart, but thank God she is easily soothed.  
    The right eye looks WONDERFUL!  We are jumping with joy, and I am holding on to hope that this surgery remains successful.  Her cornea is very clear, and there is little blood and bruising this time.  Dr. G was very happy to see the eye so clear as well.  We are back to our strict regimen of drops 4 times a day, shield on for a week, no contact in the right eye for three weeks, no rubbing, etc.  (By the way, trying to keep a STRONG WILLED 4 month old from rubbing her eyes is a FULL-TIME JOB, and it's exhausting.......)
    Next EUA (examination under anesthesia) is November 11th at 9am.  We pray for LOW glaucoma numbers and NO SURGERY NEEDED!  :)

September 23

Another one on the books! 

  We (Joel, Mom, and I - Dad was home to see Em off to school and be there when she came off the bus) arrived at University of Minnesota Amplatz Children's Hospital at 7:30am, after giving Sadie her 3am formula and 7am pedialite.  Check-in has been smooth, as we are familiar with the registration process by now.  We barely had time to sit in the waiting room before we were brought into room 5 for pre-op.  

Styling in her koala rocket ship surgical wear.

The nurses were exceptional, as always.  We went through the same routine: meet and talk to the anesthesiologist (had the same one as last surgery), the nurse anesthesiologist, nursing assistant, and see Dr. G.  The patient care coordinator was there as well, and we always go through the old song and dance: "Oh, you're here!  I'm happy to see you again but sad that you have to be back." 

Sadie really has been a trooper; we are constantly amazed that she rests before each procedure and is calm for the bulk of our waiting time.  She never gets upset when they are checking her blood pressure, putting on her ankle name bracelet, or attaching her oxygen monitor.  

Sleeping peacefully with Grandma Debbie.

Sades with GIGI, her giraffe.  

She was taken back to the OR at 9:15, and goodbyes are always hard.....they never get easier.  The tears flow quickly and hard, and then we take deep breaths and remind ourselves that we are doing the right thing.  

After a LONG 45 minutes, Dr. G's nurse called into the waiting room phone to let us know the plans: she was going ahead with a goniotomy on the right eye.  The glaucoma pressure in her left was at an 18 - best it's ever been!  We were very excited to know that the goniotomy on that eye has been successful thus far and doesn't need a shunt quite yet.  Then we were informed that the right eye (which only three weeks ago was at a 20) was now at a 40 and needed a procedure to lessen the pressures.  WHAT?!  But we've been so diligent about drops!  After I got off the phone, I cried with mixed emotions; I was thrilled to hear that the left was still doing so well (as Dr. G had assumed she was going to go ahead with a shunt in the left), but I was frustrated that with all of our hard work, the right pressure number still raised.  I'm also learning to trust my "mommy gut"; in the past two weeks, I've noticed some haziness in her right cornea, but loved ones around me tried to convince me that I was overreacting.  Low and behold, glaucoma was rearing it's ugly head again, and surgery was needed.  (If you would have told me last year that I would know so much about the human eye, I would've thought you were crazy!)

While in the waiting room, we met a wonderful family whose 10 month old was born with a unilateral cataract and was going through an EUA that morning to check for glaucoma.  She had a fabulous pair of pink glasses on, and I got to chat with her grandmother about the battles of contact lenses, drops, and the like.  How wonderful to not be alone in this battle!  We have now added sweet Gracie to our list of nightly prayers.  

Sadie was in the recovery room by 11:57, and we were called back shortly after.  It's never easy to see her with a flushed face, squirming in pain, and restless.  Yet she was an amazing trooper once again, and she never cried.....I wish I had her strength!

I fed her 2 ounces of pedialite, and after she polished that off, we gave her 4 ounces of formula.  She takes food SO well after anesthesia, unlike most of her family members.  :)  We waited around for the 2 hour window to pass, and blood pressure stats, oxygen levels, temperature, and heart rate was all healthy and strong. Dr. G checked on us, and I explained my frustrations with the glaucoma meds not "doing their job".  She said it was a tricky disease - is it ever!  It has a mind of it's own, and if all of the parts in Sadie's eyes are not working together to drain the fluid, the pressure numbers rise.  We were encouraged, however, to hear that there were no cracks in her cornea this time around, and the optical nerve looked good.  Thank God for small miracles!

After being discharged, we rested at home.  The night was hard, and her pain was high, but she's HOME.  God bless our fighter!

"ET phone home".  

International Talk Like a Pirate Day

This is what I posted on FB today:

It's INTERNATIONAL TALK LIKE A PIRATE DAY. Here's a pic of Sades from weeks ago. The cutest pirate I know!  Aargh!

Then I read a great article on L4E: Not a Pirate, Just a Kid.  Now I feel, well, horrible.  I am learning as I go, and in many ways this world is still incredibly unfamiliar to me.  It's becoming more "normal" every day, but it's still not right or fair.  And I strive to gain more knowledge of this world EVERY DAY.  So forgive me, social media, for not understanding that my child's diagnosis and disease is not something to joke about.  But please forgive me when I need to joke about it, when laughter is all that can make it better at the moment.  I am only human.  I am learning.

Contact lenses - not just for adults anymore!

Dr. W., Sadie's contact lens doctor, has officially trained us twice in getting the contact lenses in and out.  It's been, well, horrendous each time.  Our little gal screams her head off the second Dr. W. comes close to her, even though she's an amazing and sweet woman.  I tell her not to take it personally; I have a feeling she's been through that before!  :)

Every time Joel and I have attempted to take out the contacts, I have lost my cool - I curse God, curse my husband, curse myself.  I cry and start shaking from the sheer stress of it all.  WHY IS IT RIGHT AND FAIR AND OK FOR ME TO BE PUTTING CONTACT LENSES IN MY THREE MONTH OLD?!  Why is this happening to US?!  Why must Sadie go through such struggles at her little innocent age?!  I have not handled myself in the best way, and I'm ashamed of my reaction(s).  Yet, who knew that God had this in store for me when we were trying desperately to add to our family?  

All I can tell myself is that up in Heaven, there was this perfect little angel with one "minor" imperfection: her eyes needed help.  God heard mine and Joel's prayers for a second child, and knowing that we'd do anything for our babies, granted us this truly remarkable baby girl who was destined for greatness.  Along the way there would be some pitfalls, trials, and tribulations, but it would make us stronger in the long run.  

I keep repeating my mantra - some days it sticks, most days it's a challenge to remember the positives.  But temporarily, this is....well, the hardest thing Joel and I have ever faced.  Please, God, be with us and help us to see your plan.